The MS Wire - A Column by Ed Tobias

Florida, MS biomarker, Lemtrada, nasal spray

Diagnosed with MS at age 32 in 1980, Ed has written the “MS Wire” column for Multiple Sclerosis News Today since August 2016. He presents timely information on MS, blended with personal experiences. Before retiring from full-time work in 2012, Tobias spent more than four decades in broadcast and on-line newsrooms as a manager, reporter, and radio news anchor. He’s won several national broadcast awards. As an MS patient communicator, Ed consults with healthcare and social media companies. He’s the author of “We’re Not Drunk, We Have MS: A tool kit for people living with multiple sclerosis.” Ed and his wife split time between the Washington, D.C. suburbs and Florida’s Gulf Coast.

Need Help Paying for Your MS Drug?

With last month’s approval of the multiple sclerosis drug Ocrevus, I’ve again heard the plea “But how can I afford it?” Ocrevus carries a price tag of about $65,000 a year. That’s not high compared to some other MS drugs, but it still can mean a higher…

Ocrevus: Should I Switch?

There was much fanfare when the multiple sclerosis drug Ocrevus (ocrelizumab) finally was approved by the U.S. Food and Drug Administration last week. Perhaps a little too much fanfare? For example, a story broadcast on the NBC Nightly News focused on a woman, apparently a participant in an…

My MS Is Getting to Be a Pain, Literally

For most of the 36 years since I was diagnosed with multiple sclerosis I’ve not been bothered by pain. Just lucky, I guess. Until last month. Suddenly, I’ve developed pain in both hips and I don’t know why. The pain is most intense when I first put my feet on…

Using Tattoo Art to Make a Statement About MS

There won’t be a lot of my words in this column but there will be lot of pictures. The column is devoted to some very personal multiple sclerosis art: Tattoos. Most of these “tats” contain an orange ribbon, the symbol for MS awareness. Some, as you’ll see, are a…

Alexa, Tell Me About MS

Alexa, Amazon’s little voice-activated information box, has just received a multiple sclerosis infusion. As part of MS Awareness Month, fifty facts about MS have been loaded into Alexa’s memory. If a user says “Alexa, start MS Awareness” the system will respond with a random MS fact. (And a short…

Is Your Doctor’s Business Interfering With Your Treatment?

One of my favorite movie lines appears in “Jerry Maguire.” Sports-agent Maguire is trying to convince one of his football-player clients to stay with him and the client keeps insisting: “Show me the money.” I got to thinking of that line the other evening, while reading a Facebook post…

MS Advocates Hope Better Data Will Mean Better Care

The practice of collecting data about how we MS patients go about living our lives, and then using that data to improve our patient care, seems to be gathering steam. In the European Union a project called Real World Evidence Data, or RWE, is working outside of the…

Know Your MS Treatment Options and Minimize Your Regrets

A few weeks ago I wrote a column titled, “Why Can’t Some MS Docs Communicate With Their Patients?” It’s very unlikely that two doctors from the Cleveland Clinic — Mikkael A. Sekeres and Timothy D. Gilligan — read that column. But they, too, have written a piece about a…

FAQs About the Bioness ‘L300 Go’ for Foot Drop

Earlier this month Bioness announced that the U.S. Food and Drug Administration had cleared its new “L300 Go” functional electronic stimulator (FES). It’s an upgrade of the original “L300” that I’ve been using for more than five years. Without the “L300” strapped to my left leg…

Stimulating Neurons to Help with Problem-Solving

One of the most troubling symptoms of multiple sclerosis, especially for those of us who are still working, is “brain fog” — not being able to concentrate … not feeling “sharp” when working on a task or solving problems. So I was interested to read about a new…

I Have MS. Do I Tell the Kids?

It’s a question that nearly every MS patient faces. When do I tell my children about my multiple sclerosis, and what’s the best way to do it? In early January I wrote a column about sharing an MS diagnosis. It was prompted by a reader who had told…

MS Drug Costs: The Elephant in the Examination Room

A lot of factors go into our decisions when we select the drug we’re going to use to fight our multiple sclerosis. How well will it work? What are the possible side effects and how serious could they be? How will using the drug (taking a pill, giving myself a…

Stem Cell Treatment for MS: Can’t We Move Any Faster?

There is some good news about stem cell therapy. A just-published study concludes that one form of human stem cell therapy is more effective at treating multiple sclerosis than the best of the MS medications being used currently. The not-so-good news is that approval of this…

MS Marathoner Cheryl Hile Conquers Antarctica

Back in September I told you about Cheryl Hile. Cheryl is a young woman with MS whose goal is to become the first person with MS to run in seven marathons on seven continents. In September she had just completed her first marathon, in Cape Town,…

MS and Falling the ‘Right Way’

Uh oh! My cat, T.J., is under my feet trying to nibble my ankles as I stumble toward the bathroom in the middle of the night. I know what’s about to happen. As I try not to step on T.J.’S tail, it’s already started. I’m going down. It…

My Lemtrada Coaster Has Been Rolling

About two weeks ago I wrote about my roller-coaster ride being pretty smooth since my first round of Lemtrada infusions ended in early December. Well, the loops are now looping. Month two post-infusion began with a good lab report, but also with an appearance of the up-down fatigue monster.

Pills, Shots or Infusions for Your MS?

Oral multiple sclerosis meds appear, more and more, to be the first choice of patients who are just beginning to receive an MS treatment. A recent report by the independent marketing research firm Spherix Global Insights shows that oral disease-modifying therapies captured a significantly higher…

Bicycle is Designed to Mimic the Symptoms of MS

Want to know what living with MS feels like? Take a ride on this bike. Those of us who have MS know that our disease has lots of symptoms. There are the legs that feel like they have 20-pound weights on them … balance that can have you…

MS Drug Treatment Costs Start the Year Headed Up

I don’t think this will surprise you. Multiple sclerosis drugs, some of the most expensive drugs there are, are getting even more expensive. Drug industry analyst Eric Schmidt, quoted in the Boston Business Journal, reported that Biogen began the new year by upping the price of Tecfidera,…

Lemtrada for My MS: First Month Report

It’s been a month since I completed my first round of Lemtrada infusions, so it’s time to bring everyone up to date on how things are going. I was told to expect a roller coaster of side effects. I’m pleased to say that, at least so far, it’s…

Are You In or Out of the MS Closet?

An MS patient who reads my column sent a personal message last week. It began: “Sorry about the secrecy. I’m in the closet! Seriously, I haven’t told many people about my RRMS diagnosis, for many reasons. I really don’t want my kids knowing. … I want to spare them that…